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Welcome to Our Parkinson's Place

I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's diseases as well and thought it would be nice to have a place where updated news is in one place. That is why I began this blog.

I am not responsible for it's contents, I am just a copier of information searched on the computer. Please understand the copies are just that, copies and at times, I am unable to enlarge the wording or keep it uniformed as I wish. This is for you to read and to always keep an open mind.

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Monday, June 26, 2017

Dad's Parkinson's drove him to suicide, but I won't let mine destroy my life. Sky presenter Dave Clark bravely goes public with his devastating diagnosis

June 25, 2016

When Dave's father Alan got his illness, all he wanted to do was hide it

Dave is certain that this added to the depression that caused Alan's suicide

Which is why Dave feels he must talk about the disease he suffers from

Haunting legacy: Six-year-old Dave Clark on holiday with his dad Alan

We were mid-interview, in front of a crowd of 3,000 and a TV audience of 1.5 million, when, without warning, my right hand - which was holding the microphone - began to shake uncontrollably.

This was a live broadcast for Sky Sports and I was talking to Phil Taylor, who'd won his 16th World Darts Championship.

Up to that point, the interview had gone well, but now all I could feel was panic. After two years of trying to cover the traces and keep it secret, I was about to be 'outed' as someone who had Parkinson's.

Suddenly, that huge auditorium felt frighteningly small. My overwhelming instinct was to run. Instead, I switched the microphone to my left hand and tucked the shaking right hand under my left armpit to keep it still.

Exposure was averted. But it left me unbelievably scared. For my dad, Alan, had also had Parkinson's. And what started as a twitch in his right hand ended seven years later with him taking his own life in a cold dark cellar in our house in West Yorkshire when I was 17.

The reason for the suicide was the depression that descended on him as this dreadful illness took hold.

Parkinson's leads to a death of the brain cells that make dopamine, which acts like sunshine on your mood. As dopamine levels drop, so does your mood; that's why 40 per cent of people with Parkinson's get depressed.

Before his illness Dad had been a happy, sociable person, a real character. A big Yorkshireman and former rugby player, he'd always seemed to be physically robust. Yet, as the illness took hold, so his mood gradually declined and his nature changed.

I'm certain that hiding his illness and not talking about it added to Dad's depression.

After he was diagnosed, he was simply given a leaflet by the doctor and told to get on with it. He had to fight the battle on his own.

Keeping active: Dave presenting for Sky Sports in 2012, a year after his diagnosis

Of course, he told my mum, Audrey - but no one else. I worked out he had Parkinson's only after stumbling across a TV show on the subject when I was 14 - four years after he was diagnosed - and asking my big brother: 'Is that Dad's problem?'

Thirty years after he died I was told that I, too, had Parkinson's. Dad's health problems had returned to haunt me. The difference is that I'm not going to hide them.

The course of my life changed irreversibly on January 25, 2011. I had just spent 15 days presenting the darts for Sky Sports: more than 100 hours of live television, record crowds, record audience figures. I was on a high. Then the thunderbolt: the diagnosis.

Looking back, there had been plenty of signs. For the past four years my hand had gradually felt stiffer and I was unable to write as quickly.

I saw a physiotherapist, who actually suggested Parkinson's, but my reaction was: 'Don't be ridiculous.' I am quite healthy and fit, and cycle, jog or swim three times a week as well as playing five-a-side football. It didn't seem plausible back then.

In the back of my mind too, was the fact that just after Dad had died, the doctor told me Parkinson's 'is absolutely not genetic - don't worry'.

In 2010, I went to a specialist about a squint in my right eye. He told me it was a recurrence of a childhood squint that had worsened with age.

Around the same time my face and jaw felt stiff in the morning.

'I Googled my symptoms. When it came up with Parkinson's, I thought: "God, please no".'

Then about a year later I was previewing a recorded show and noticed something was clearly wrong. There I was on the screen, chatting casually with Phil Taylor and Eric Bristow. But why wasn't my right hand moving? It looked listless and plastic, like the hand of a mannequin.

Occasionally, I would also struggle to grip things - a cup, a microphone. I began to experience an occasional numbness all over my head and face, and my speed of thought sometimes slowed down. Occasionally, I limped.

None of these symptoms followed a neat time line. Sometimes I would have a limp, sometimes I would have a stiff hand, sometimes I'd feel fine.

The physiotherapist said these problems were not mechanical, but most likely neurological.

That really set alarm bells ringing. I Googled my symptoms. When it came up with Parkinson's, I thought: 'God, please no.'

When a neurologist starts asking you what you do for a living, the number of children you have and whether your mortgage is big, you know you're in trouble - and I was.

Various scans, blood tests and several meetings later, it was confirmed. I was 44 years old and I had the 'old man's disease' Parkinson's.

I walked home afterwards with my amazing wife Carolyn, baffled and crying. It felt like life had hit a buffer. Two small children (aged seven and 10), a great job, everything flowing along. Then this.

I couldn't face telling my mum on the phone. I got my big brother, who lives close to her, to go round. I'm so grateful he did that.

It was never going to be an easy conversation, it's like history repeating itself - except I want to make it through differently.

Before the illness: Alan in 1951 and eight-year-old

Dave (bottom left) with his mother, father, and brother Michael, 10

In the Eighties I'd been reassured there was no genetic link. Now we know differently, with 12 genes identified so far. I don't have any of these, so it could just be bad luck. Or it could be they have not identified the genes relevant in my case.

The first neurologist I saw handed me a prescription for Levodopa, which increases levels of dopamine.

Although it was for a very low dose, Levodopa is a powerful drug with massive potential side-effects including seizures, depression and suicidal thoughts. It was the drug Dad was prescribed 30 years ago.

Forty years after it was introduced, Levodopa is still the most effective medication. I feared not much had changed. I sought a second opinion and nearly two-and-a-half years later I haven't yet taken Levodopa.

I'm still presenting live sport, and getting by with plenty of rest and taking just one pill a day, of Rasagiline (which works in a similar way but is not as strong).

'After nearly two-and-a-half years of silence, two-and-a-half years spent working through the implications, I am ready to talk about it.'

The doses and variety of drugs will increase, as will my level of disability. But while there's no cure yet for Parkinson's, since my dad's diagnosis there have been huge improvements in attitudes and medical research. And there is hope, always hope.

Most of the time I still feel very well and am carrying on life as usual as much as possible.

My dad tried to do that but it was a nightmare. He kept on working - as a sales rep - for six years, but had to lock himself away to get his ledgers written. It took him hours because his hand would shake so much.

I've learned that exercising, eating well and not cutting yourself off from others really helps. You have to keep moving and talking.

I've also learned that it takes a very special type of person to keep a secret, and some people I have trusted with my news have let me down.

I was going to tell my colleagues as soon as I was diagnosed, but the specialist suggested I didn't ('Do you want to be asked how you're feeling every five minutes?'). The thinking and the evidence right now in the Parkinson's world is that a public diagnosis tends to end your career - you're labelled 'disabled'.

I was shocked such attitudes persist. I did inform my boss, whose enlightened response was to hand me a new contract.

Although I haven't dared to Google myself, I gather, as a joke, someone who's oblivious to my illness changed my Wikipedia page, making fun of my face and eye. And on Twitter I've seen people mention my 'cod face' and 'Thunderbird/robot arms'.

One tweeter described spotting me staggering around town drunk at 6pm. Actually, it was a bad day with my Parkinson's. These, too, are good reasons for letting people know. But there are better ones.

Parkinson's took away Dad's confidence, his smile. His huge strong frame became bent and disfigured. He withdrew from public life and eventually from life itself.

He wanted to hide away - and it pains me to say this, but I wanted to hide him away. I didn't want him standing on the touchline when I was playing rugby and football at school. I didn't want my friends to see him. Teenagers feel embarrassment keenly, and in those years he embarrassed me.

I'm now embarrassed for feeling that way, and I realise how important it is not to hide. So after nearly two-and-a-half years of silence, two-and-a-half years spent working through the implications, I am ready to talk about it.

But it's not all gloom if you refuse to let it be so. There are even positives. That lack of facial movement makes it appear that I've had Botox. Lots of people on the telly spend thousands acquiring this look.

Something else: a few pints of delicious real ale eases the symptoms.

I've also rediscovered my love of skiing and travel. My 'bucket list' is growing by the day. The Galapagos Islands and Madagascar are on there. I have broken the bank to take the family on a trip to Tanzania.

I've even fulfilled a life-long ambition by buying an old VW Campervan. It feels good to be seizing these chances.

I'm inspired by others with Parkinson's - Amir Khan's old trainer Freddie Roach, actor Michael J. Fox and former Next boss David Jones - who continue to live full, productive lives long after diagnosis.

Then, of course, there's Muhammad Ali.

Ali once said: 'When a man says “I cannot”, he has made a suggestion to himself. He has weakened his power of accomplishing that which otherwise could have been accomplished.'

I've thought about those words a lot since my diagnosis.

I'm not going to curl up in a ball. Parkinson's is emphatically not a death sentence and I'm feeling positive about the future. I'm up for the fight and, if I can, I want to make a difference.

Brave: Dave continues to present live sport and is carrying on with life as usual

I
just began writing Poetry for my newest blog: "P0ETRY:LIVING LIFE TO THE FULLEST
WITH PARKINSON'S DISEASE." It is mostly upbeat and sometimes funny. I hope you enjoy it.

I am a wife, mother and grandmother. I was diagnosed in 2004 by a Neurologist and a Neurologist- Movement
Specialist. Going back through my medical records, I had tremors since 1987. I
have dystonia of the feet and calves as well. In 2004, I had a major stroke and
was paralyzed on my left side. It took a year of Physical Therapy to regain 99%
back.

I feel strongly about
spreading the word about Parkinson's Disease as we travel throughout parts of
the United States. My husband Larry, married on August 2, 1966 to my best
friend.been married for 50 plus years. In 1967 he joined the Marine Corps as an enlisted Marine , then became a warrant officer 4 Selective and retired as a Capt serving over 22 years. ( A Mustang). I am fortunate to have the support of my family and friends. I also have a maltese named Spencer who is my Service dog.God has
truly blessed me and I am thankful. Parkinson's Awareness is important to
me. I continue to exercise, meditate and thank the Lord for each day. God Bless our military and their families. God Bless the USA. Semper Fi !

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